Delainey was our first born child. We had no idea of her diagnosis prior to her birth. All that was detected prior to her entering the world was that she had large cystic kidneys. We went for frequent fetal assessments and never caught any other abnormalities that come with Trisomy 13. This rare chromosome abnormality means she had a 3rd copy of the 13th chromosome instead of the usual 2.

Delainey was born with a cleft lip and palate, her left eye was small and underdeveloped. She had many heart abnormalities such as a large ASD and VSD and her left sorts tapered off and was severely deformed. Her kidneys were functioning at about 30% after birth and were quite cystic.

She never required any help at birth with breathing which is rare. She was born early at 33 weeks and she fought hard to prove our world wrong.

Children with T13 are given a 90% mortality rate before the age of one year old. These kids are deemed incompatible with life. We were told there was a 5% chance she would live past 3 months of age. Our daughter is 3.5 and still going strong.

We were told she would be a burden to us, she would live a life of pain and she would be unhappy. We were told these kids can't show emotion, will never walk, or talk, crawl, eat on their own and many other things. We may not see Delainey do every one of these things but she has started talking, understands commands and answers questions with a yes or no. She can feed herself orally, she is crawling all over the place. She laughs......and I mean full out LAUGHS!! Her giggle is so infectious and adorable and she melts everyone hearts. She is very smart and has such a sweet but witty personality. Delainey can stand unassisted for short periods of time while leaning against a wall or furniture. She can walk as long as she's holding your hands. She walks along furniture as well.

She is the JOY to our life. She's the sunshine to our day. She has made us all better. I never wanted to be a special needs parent, but what a blessing it has been to be chose to be on this journey with her.

Delainey continues to defy the odds and the medical community that works with her is beyond words happy for her and are so glad she proved them all wrong.

I received a lot of support from SOFT www.trisomy.org they had so much information that wasn't given to me in hospital. There were so many other Trisomy families for me to connect with. Most importantly is I found HOPE when I was connected with the SOFT organization. SOFT is the Support Organization For Trisomy 18, 13 and Related Disorders. The SOFT community website offers registration for news events, surgery registry, annual conventions and other trisomy resources for support.

You can read more about
Trisomy 13 and receive incredible on-line support through
the private message board on www.livingwithtrisomy13.org.

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.